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Ca-153 has gone up suddenly after 10 years

intheclub
intheclub Member Posts: 20

hello all our lobular family! Been ages since I’ve posted but I had a scare yesterday my TM ca153 gone from 28 to 188. My GP ran the tests as I’m almost ten years since mastectomy. I’ve been quite unwell, very sore back and tummy so getting scans done in next few days. I’ve been having terrible vomiting too so something isn’t right. I’m 55 now and was very excited about the 10 year milestone!

I will report back in next week or so. Has anyone had similar TM results after being in normal range for so long. I havnt had anything that might affect TM results eg surgery etc. Thank you

Comments

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2022

    Intheclub,

    My oncologist always used the CA27-29 rather than the test for TMs that you've used. My original cancer was found in 2003. I had a single site recurrence in 2006, so she started TM testing in 2006. My TMs stayed in normal range until 2018 when they started to climb. We watched them for about 6 months, and then scanned, and it was indeed progression, I'm sorry to say.

    Lobular can have a late recurrence, as mine did. I hope that is not what is going on, but I wish you luck with your testing and hope that it's something unrelated to breast cancer. If it is breast cancer, there are many new treatments now that we didn't have 10 years ago. So make sure that you get yourself into a good cancer center if the scans show progression.

    Good thoughts coming your way.

  • kbl
    kbl Member Posts: 2,637
    edited February 2022

    intheclub, I'm sorry you're not well. I would consult a gastro doc to see about an endoscopy as well. None of my cancer showed on PET, CT, or bone scans. My bone and bone marrow mets do show up on MRI. My cancer was de novo, Stage IV out of the gate. It metastasized to my stomach. This is not to scare you, just to make sure you cover all bases. I lost a lot of weight and couldn't eat more than a few bites without feeling full or nauseous. I have never vomited from it, though. My 15-3 was 220 when I was diagnosed. My 27-29 was 490.

  • intheclub
    intheclub Member Posts: 20
    edited February 2022

    Thank you so much for replying. I have had endoscopy three years ago all clear. My symptoms this time are worse than anything ever before. I will post again once I know more thank u for your advice it is super appreciated!

  • kbl
    kbl Member Posts: 2,637
    edited February 2022

    intheclub, I just wanted to let you know I had a bone marrow biopsy in 2016 which didn’t find any cancer. I am loaded in all of my bone marrow. In 2020 I had a bone biopsy (different than a bone marrow biopsy), but it was CT guided, so they took a sample directly from a lesion. The bone marrow biopsy just happened to take a piece that had no cancer. I didn’t know that could happen. They should have done it CT guided.

    If your symptoms don’t get better, I wouldn’t hesitate get another endoscopy and ask for samples to be taken, even if it looks like there is nothing wrong. Better to know you’re still all clear.

    Hugs to you, and, yes, please keep us posted on how you’re doing.

  • intheclub
    intheclub Member Posts: 20
    edited February 2022

    Thank you KBL and BevJen I'm so grateful for the time you guys have taken to reply. MY oncologist is outstanding and knows about lobular and I texted him to ask if we need to talk to radiologist about lobulars imaging challenges and he replied that he had! Im very nervous about getting a false negative pet/ct scan and im hoping that the severity of symptoms means that they will be able to see it on the scan!

    My GP said she felt a mass on my left side of tummy and I've lost loads of weight. If I eat it feels like it's sitting near my diaphragm and is so uncomfortable. I will report in after scans this Friday. Thank you again for the information you gave it is so appreciated. And of course im sending you huge hugs from New Zealand. X


  • intheclub
    intheclub Member Posts: 20
    edited February 2022

    Hello my friends. Terrible news today. Scans show ten lesions in bones biggest one in lower lumbar spine, Mets to tummy, chest, and some blocking urethra and kidney. Very disappointed. I will meet with oncologist this week and keep you updated. Lobular is a terrorist! My last scans two years ago were clear and now this. My daughter 18 and son 22 are first and foremost in my mind - my husband is too of course but the kids!!!

    I will update next week. XO

  • BevJen
    BevJen Member Posts: 2,341
    edited February 2022

    intheclub,

    I'm so sorry to hear your news, but unfortunately, not surprised. Not sure what therapy you've been on, but there are lots of new drugs, as I mentioned before. Also, you may want to try and find a doc for a second opinion who deals with lobular or has an interest in it. Personally I think it's baloney that those with lobular are given the same playbook as those with ductal cancer. One place to start looking is the Lobular Breast Cancer Alliance board. There might be a doc there who could provide you with more insight or direct you to someone near where you live who would know more about lobular cancer.

    Please let us know. And I am so sorry for your news.

  • moth
    moth Member Posts: 3,293
    edited February 2022

    hello intheclub, I'm sorry to read your news. Such a gut punch.

    Can I suggest you join us on the Stage 4 forums. We have bone mets thread https://community.breastcancer.org/forum/8/topics/...

    & threads for the common treatments etc in that forum. You may also want to check out Me's living room, where we just hang out & commiserate https://community.breastcancer.org/forum/163/topic...


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2022

    Here is the stage iv "Lobular sucks!" Thread

    https://community.breastcancer.org/forum/8/topics/874731?page=12&post_creation=true#post_5737892

    I just posted on your most recent thread. I have peritoneal mets that have blocked my transverse colon (had resection surgery), then a ureter (got a nephrostomy; tube and bag), and the outlet of my stomach to intestines (got a drainage G tube). Waiting to see if my new treatment, Enhertu, will beat it back so I can lose the tubes.

    So sorry about this recurrence you are dealing with! Let's hope your upcoming treatment works quickly and well and you can avoid tubes. I have hope for that, especially as this will be your first line treatment for mets.

  • intheclub
    intheclub Member Posts: 20
    edited February 2022

    hello SP

    I am blown away at how supportive this place is and I can't thank you enough for sharing so much valuable information, it is so helpful to hear what you are doing and how similar oursituations are.

    I will private message you but in the meantime thank you it is so appreciated.

    xo

  • BWorrier
    BWorrier Member Posts: 6
    edited May 2022

    Hi, intheclub: You got hip pain 7 years ago, how come they couldn’t figure it out at that time? Did you do the MRI at that time? MRI is much more sensitive.

  • dclancy64
    dclancy64 Member Posts: 4
    edited July 2022

    I just joined this site yesterday looking for information on ILC, since so little research is done on it. I was diagnosed last December with ILC and had a bilateral mastectomy in Jan, 2022. I chose not to do radiation, and due to a low Oncotype DX score (4), have only been taking Arimidex. Due to my older sister having IDC 16 years ago and getting tumor marker labs frequently, I asked my oncologist about them last month, and he told me that the tumor markers aren’t used for ILC, only IDC. Hmmmm, after reading this thread, I’m questioning his judgment. All that to say I am so sorry to read about your recurrence. I hope your treatment is going well. Hug

  • kbl
    kbl Member Posts: 2,637
    edited July 2022

    I’m just seeing this post, but that is not true. If it weren’t for my tumor markers, I wouldn’t know what’s going on. CT and PET do not see my cancer at all. I am on Xeloda, and I know it’s working because I’m able to eat and have gained weight. All of my tumor markers are down 100 to 200 points, so they concur and are a tool in my toolbox. I agree they don’t work for everyone, but I’m thankful my oncologist tests them monthly.

  • elderberry
    elderberry Member Posts: 1,037
    edited August 2022

    my MO does tumour markers with every blood test. Since my tests have been so stable I have gone from ever three weeks to every six. I like to have the markers there, just for my own head. I don't know why ILC or IDC should make any difference.

  • wallycat
    wallycat Member Posts: 1,182
    edited August 2022

    In the club, I'm so sorry to read what you are dealing with. You are the poster-gal for every one of us...thinking our milestones can prevent mets and then wham. I'm so very, very sorry. My onco does not do tumor markers. I'm dealing with a different condition that requires me to do (now) annual labs and it ruins the days upcoming and waiting for results. Life and time are so precious. I wish you the best.


  • nkb
    nkb Member Posts: 1,561
    edited September 2022

    Intotheclub- I hope we get an update from you soon and that you are responding to your treatment.

    I have ILC and do Ca15-3 every month (did not do them before became stage 4). they are very predictive for me and even though the PETs show my disease- the tumor markers seem to be ahead of the progression on scans- they give me a clue that things might be brewing. they also go down quite rapidly when I have a new treatment that is working. it is nerve wracking to get them every month- but, they really help me monitor my cancer.

    Good luck. love New Zealand!!

  • intheclub
    intheclub Member Posts: 20
    edited September 2022

    Hello everyone, thank you all for your posts and kind words, so appreciated.

    I’ve been on palocoxib and letrozole for about 6 months. My last monthly blood tests out ca153 at 40 so going downwards each month.

    Started zolendrolate two months ago and have been doing IV Vit C twice a week for two months. Last scan showed everything shrinking.

    Have felt wiped out which I hope is the Palocoxib! Also enrolled in the London Care Oncology patient funded clinical trial protocol similar to How to Starve Cancer protocol. So will keep you all posted on that. I am also taking the supplements Jane McLelland recommends in her Starve Cancer protocol - so many pills to take but for those of you who follow her you’ll know there are many people who are surviving doing her protocol in conjunction with the conventional meds.

    If anyone has help for managing fatique and body aches that would be great.

    I’m looking into the Onconomics Plus cancer testing as someone at Vit C place said I should investigate - they basically tell you what the cancer is susceptible to - what might work in terms of treatment etc. Going to ask my oncologist next week.

    Felt a wee bit lost this week - so fatigued and disappointed to be here - my kids are 19 and 22 and I really want to be able to do more but just seem so tired at the moment. I think the bone infusion has knocked me around this month.

    Thanks so much to all of you it was so great reading the messsges and I hope you are all doing ok. Cxox

  • meow13
    meow13 Member Posts: 1,363
    edited September 2022

    I would not be too alarmed it is the trend that is important one elevated reading isn't that important. Hope you feel better soon.

  • intheclub
    intheclub Member Posts: 20
    edited December 2022

    hello everyone I posted a reply and think I lost it so here is latest:

    Ca153 has risen to 188 it was 53 three months ago. We thought I was in some kind of remission!

    I had softened off on my iv vit c dropping to once a week and had a short break off London Care Oncology protocol - funny that markers went up!

    So I’m back on everything and waiting for an urgent pet ct scan. has anyone else had rising ca15-3 that was just a blip rather than catastrophe!

    Thank you all! C

  • meow13
    meow13 Member Posts: 1,363
    edited December 2022

    No but I am 11 years out and ultrasound and mri found small mass in gallbladder. There are 23 confirmed cases of ilc showing in the gallbladder getting mine removed next week. My Ca-153 remains low.